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Hello and welcome to our site! My name is Joan Miller and this site pertains to our ongoing quest to help our son, Eric, find a matching kidney donor.
Eric was born with kidney failure and, at age 11, I donated a kidney to him which functioned well for a decade and a half. Currently Eric is on dialysis every night, for 10 hours, due to his transplanted kidney failing. When Eric's transplanted kidney began to fail, it was discovered that he has an extraordinarily high antibody level. In medical terms, he has a PRA of 94, which means Eric only has a 6% chance of being a match with anyone tested. That discovery was the catalyst in our search for a matching kidney donor. Eric's brother, Scott, was tested for compatibility but, unfortunately, was not compatible. Eric's father, Pat, is diabetic, which automatically eliminates him as a donor. Eric is listed on UNOS (United Network of Organ Sharing) but the wait could be years long!
Eric was interviewed by MyFoxPhilly in June, 2007 after his friends Mike and Mel contacted Fox 29 in Philadelphia about our search (a video clip of that broadcast is located at the bottom of this page). Our search was also discussed on the Preston & Steve Morning Show on Philadelphia's 93.3 WMMR in early October, 2007 as well as advertised on the Preston & Steve website. Our search is being advertised by both 98.1 WOGL and 102.9 WMGK in Philadelphia on their websites, as well. The North Penn Reporter and Times Herald (Montgomery County, PA) wrote an article about Eric in March, 2007, as well. On January 9, 2008 we were invited to Preston & Steve's studio and we discussed Eric's need for a matching kidney donor on the air (an audio clip of that interview is located at the bottom of this page). We cannot thank WMMR and the cast of the Preston and Steve Morning Show enough for their support!!
In an effort to expand our search even more, we have posted flyers in various commercial establishments in the Montgomery, Bucks, Philadelphia and Delaware county areas. We have also had vinyl lettering advertising our MySpace site placed on all of our vehicles and the vehicles of some of our supporters.Supporters of our search have informed us that they have posted flyers in Pennsylvania, Ohio, New York, New Jersey, Delaware and even in California.
We developed a MySpace profile in early October, 2007 where we have met a lot of wonderful people who were willing to help us either by being tested as a donor or by distributing our flyer and/or our web banner to aid in the search. Placing one of Eric's banners on your MySpace page can truly have far reaching effects. Shortly thereafter, we decided to bring MyKidneyQuest.com to life as an additional way of searching for Eric's hero.
This website will be an ongoing and consistently growing project which will be updated frequently.
During the many months following the onset of our search for a donor for Eric we encounted dozens of selfless individuals willing to be tested. In March of 2008, approximately nine months after the onset of our search and after dozens of selfless individuals were already tested, we recevied an email from Jeff Hil.
Jeff has a close friend who needed a kidney transplant and he had offered to donate to him but was incompatible. Jeff decided to try to search the internet to try to find a donor for his friend. Jeff was actually in Seatle, Washington when he came across Eric's webpage.
Eric was listed at two transplant centers. The University of Pennsylvania transplant center required all donors to physically visit their clinic for testing and an informational center. The Johns Hopkins Hospital transplant center would mail a donor kit to him requesting basic information and then mail a kit for blood drawing. Since Jeff was thousands of miles away, we referred him to Johns Hopkins.
The initial blood test between Jeff and Eric showed promising results. Additional blood tests were required to contiue the evaluation. An all day appointment was scheduled in June of 2008 for Jeff to receive a battery of tests to confirm that he was both physically and mentally healthy and, therefore, acceptable as a donor. We met Jeff in Baltimore to show our support and appreciation.
Many transplant centers frown upon altruistic donation. However, without the acceptance of altruistic donors the wait to find a compatible kidney can be years, if not a decade.
During the June meeting with the various doctors, we were told that it looked as if the transplant between Jeff and Eric would work well. About two weeks later, Eric's transplant coordinator told us that she did not think we should proceed because of the presence of a specific antibody. We were all devastated! However, within a few days Jeff and I decided to question the hospital, in specific, the transplant coordinator about this decision. She was on vacation for two weeks and another coordinator took the issue before the "Kidney Committee" and we were given a go ahead for the transplant to take place. The point of this paragraph is to convey the fact that it is acceptable, and often necessary, to question issues that do not seem logical.
Finally, Eric is scheduled for his kidney transplant on September 30, 2008 at JohnsHopkins Hospital. We would like to thank each and every person that has been tested to see if they were a matching donor for Eric and we would like to especially thank Jeff Hill, who is Eric's donor.
While Jeff is not an exact match for Eric, he is the closest match we have found to date. Eric's antibodies would attack and kill Jeff's kidney without the treatments available to Eric at Johns Hopkins. However, Eric will have to remain in Baltimore for a minimum of three weeks following his estimated one week hospitalization. Because of this, it was necessary to rent an apartment in Baltimore for a month which costs several thousand dollars and food and fuel expenses will definitely add up. Expenses for a month are estimated at $4,000.00.
We would also like to thank each and every person who has shown us support throughout this difficult time, whether it was by posting flyers, advertising this site and Eric's MySpace site, having our website lettering on their cars and sending all their best wishes to us. Without all of you, this would have been near impossible!
The fundraiser that was held on August 24th at the Fireside Bar and Grille in Ambler, Pa was a great success and will definitely help Eric and his family with the costs relating to Eric's transplant. The owner and staff of the Fireside were extraordinary and the food absolutely delicious!
We received many item donations from various companies in the area which were used as raffle prizes and many cash donations from people that attended the fundraiser as well as those that were unable to attend. To view pictures of the fundraiser as well as the list of the wonderful donors that made the fundraiser possible, please see the menu on the left side of this page.
Friday, October 3rd, 2008 Update
For those that have been following Eric's quest for a kidney transplant, Eric and his family have been in Baltimore, Md since September 22, 2008 to begin Eric's plasmapheresis treatments leading up to his scheduled transplant at Johns Hopkins Hospital.
During Eric's second treatment, complications began to arise. Eric developed a severe headache, stomach pains, chills and was unable to hold up his head. Shortly thereafter, Eric began having what looked to be seizures. Eric was admitted to the hospital and the doctors spent countless hours trying to figure out what was causing these seizure like episodes. During the second day it was determined that Eric was in fact not having seizures and it was brought up that Eric's level of his one medication that he recently began taking for the transplant was highly elevated and could quite possibly be the cause of these episodes. The following morning Eric stopped having these episodes and his condition greatly improved. He does not remember any of the two days he was having the episodes and is most likely better off not remembering them.
On early Tuesday, September 30, 2008, Jeff Hill, Eric's kidney donor and hero was taken to the operating room and shortly thereafter so was Eric. Later that day, Dr. Montgomery, Eric's surgeon, came out to the waiting room to inform us that Eric's transplant was a success and that the kidney began functioning right after it was placed into him.
Eric's creatinine level, which is a measure of how well his new kidney is functioning, is absolutely perfect and the doctors are pleased with Eric's progress. Eric is presently still in Johns Hopkins Hospital and will remain there until at least next week. Eric's donor, Jeff Hill is scheduled for release from the hospital as of today and will remain in Baltimore until at least next week to allow the hospital to monitor him.
Eric, as well as his family, would like to thank Jeff Hill for his selflessness in being Eric's kidney donor and hero for without him Eric would still be searching for a donor, would still have to receive nightly dialysis treatments and Eric's life would still be hanging in the balance of the quest for a kidney donor.
I will be posting any further updates to Eric's progress here on mykidneyquest.com as well as on Eric's MySpace site as they occur. We would like to ask everyone to please keep Eric in your thoughts because while Eric is doing great at this point, he is not out of the woods yet as there is still much ahead of him in the upcoming weeks.
Eric and Jeff only days after the transplant
Thursday, October 8th, 2008 Update
Eric is doing absolutely great. He has been up and walking for the past few days now and the doctors are planning his release from the hospital for tomorrow. His creatinine is holding steady at 0.7 (normal levels are between 0.5 and 1.3) and the doctors here at Johns Hopkins are more than pleased with his progress.
Eric's kidney donor and hero, Jeff, was released from the hospital as of last Friday and remained here in Baltimore until yesterday when he took a flight to return home again. While still slightly tender, Jeff is doing great as well although he will be unable to lift anything for about another 5-7 weeks.
It has also been brought to my attention that quite a few members of the staff here at Johns Hopkins Hospital have visited mykidneyquest.com. I would like to take this chance to thank each and every person here at the hospital that have been involved in Eric's kidney transplant and the times before and after the operation as well. Almost every single person in this hospital has been extremely nice to all of us and it's very easy to see why Johns Hopkins is one of the top hospitals in the country.
Monday, October 27th, 2008 update
Eric has been home for almost two weeks now and everything is still going just great! His appetite has definitely returned and he is gaining back a good bit of the weight he lost while his old kidney was going into rejection. His creatinine was tested last week and is 0.9 which is still great! While still unable to drive and lift at all, his energy level has also returned and he finds himself bored alot of the time due to his restrictions. Needless to say, Eric's doctors at Johns Hopkins are extremely happy with his progress, in fact he was actually told he was able to return home from Baltimore much earlier than we all anticipated.
On a side note, thanks to everyone that offered to be tested for compatibility for Eric and for the vast amount of information we have learned over the time searching for Eric's hero, we have decided to turn MyKidneyQuest.com into an informational website for anyone searching for a kidney donor to use. Please bear with us while we transition the site to its new format.
There are literally tens of thousands of people just in the United States alone that are on waiting lists for a compatible kidney donor. Many people do not have anyone that has offered to be tested as a donor. Others have potential donors that are incompatible. We have personally seen the impact a working kidney can have on a person with inadequate kidney function.
Kidneys do much, much, much more than produce urine!! Kidneys help regulate blood pressure (protecting your heart), make red blood cells (necessary for the energy needed to lead a normal life and provide a health glow to your skin), kidneys process more than 200 quarts of blood daily and sift out approximately 2 quarts of waste products and fluid. Kidneys measure out chemicals like sodium, phosphorus, and potassium and release them back to the blood to return to the body. In this way, your kidneys regulate the body’s level of these substances. The right balance is necessary for life, but excess levels can be harmful. Dialysis and the many required medications can certainly keep a person alive but often the life given by dialysis is not enjoyable. In Eric's case, he slept 12 hours a day and often took a nap in the afternoon. His body visibly aged. His appetite was incredibly poor. His ability to make urine ceased. He could not work. Even light tasks would greatly tire him. All of that has changed thanks to his new kidney and, of course, Jeff Hill.
We feel it is also important to point out that Eric's hero, Jeff Hill, was initially an altruistic donor. Jeff initially contacted us after finding this website while in his home in Seattle, WA. Jeff sent an email stating that he was 44 years old, didn't smoke or drink and asked how he could be tested as a donor for Eric. Altruistic donors are basically incredibly kind and giving people who come forward to save the life of a stranger. Anyone donating an organ to a recipient is a hero. However, when a person offers their kidney to a stranger they become the "ultimate hero" in our opinion. Some people in Jeff's life tried to talk him out of donating his kidney and especially because he did not personally know Eric or anyone in our family. Jeff never wavered in his decision to donate. He became a persistent force in keeping the transplant process moving forward until it was finally complete. The new format of MyKidneyQuest.com will contain a section written by Jeff providing his thoughts and feelings as an altruistic donor. Jeff recognizes the tremendous impact he has had on Eric's life and has agreed to help us help those in search of kidney donor. Contact information will be provided so that anyone with questions for Jeff will be able to contact him directly.
It is also very important to recognize Dr. Robert Montgomery and Johns Hopkins Incompatible and Sensitized Transplant program. Eric did require approximately ten sessions of plasmapheresis along with various other treatments in order for Jeff's kidney to avoid rejection. For those recipients who have a high PRA, such as Eric, the Sensitized Patient Transplant Protocol is a lifesaver. Finding a donor for Eric without this program was comparable to looking for a needle in a haystack. If a high PRA is not a concern for you, and you have an incompatible donor, Hopkins also has a Paired Exchange Donor Program. Regardless of which path you choose, we feel it important to also tell you about the extraordinary staff and physicians at Johns Hopkins. Being in an environment with highly skilled, pleasant and caring professionals is an incredible asset to your recovery.
Eric and Jeff with Dr. Robert Montgomery, Eric's transplant surgeon
Saturday, November 29th, 2008 Update
As of yesterday, we breathed a sigh of relief! In the middle of last week we were told that Eric's creatinine had jumped up to 1.25 and there were several trips to Johns Hopkins. After another biopsy and several blood tests, we were told they did not know why his creatinine had jumped. We tried hard to stay calm and believe that all would be well but that very familiar knot in our stomach had returned. On Wednesday November 26th, we were told that Eric had to return to Hopkins on November 28th for another blood test and if his creatinine had risen or stayed the same, they were going to admit him in an effort to try to find the cause. So we left home at 5:30 AM with suitcase packed and headed to Baltimore for an 8:00 AM blood draw. Shortly before 10:00 AM they called us while we waited in the lobby and told us his creatinine was 1.10 and they were not going to admit him. More blood will be drawn locally on December 1st and probably December 4th and we hope to see a further reduction in his creatinine, or at least that it holds steady.
During this time of bouncing creatinine, Eric still feels great and is truly enjoying a life that he hasn't known for about two years. Hopkins is very proactive in monitoring their patients because subtle changes can mean big problems in the future but by the time the patient feels ill, it is often too late to correct the problem. Please continue to pray for Eric!
Friday, December 5th 2008 Update
Eric is still doing very well. This week the Preston and Steve Show on Philadelphia's 93.3 WMMR, who were also the wonderful people that invited us into their radio station to talk about Eric's search for a kidney donor live on the air as well as placing an advertisement on our quest on their website, were in Plymouth Meeting, Pa for the Campout For Hunger event that they do every year to support Philabundance, a charity that helps supply food banks in the Philadelphia area. I receieved an email from Nick McIlwain, the show's producer and webmaster, asking how Eric has been doing since his transplant. I realized that no one from the show has ever met Eric even though they did so much to try to help him find a donor.
Eric and his brother Scott took a trip to the Campout For Hunger location and Eric got to meet everyone from the Preston and Steve Show. He also got a calendar that the show arranged and had all the members of the show sign it. The Preston and Steve Show is truly one of the best things Philadelphia has to offer. Out of around 150 radios DJs that were emailed, they were the only ones to offer for us to come to their station and offer their time to help save Eric's life.
Once again, I would like to sincerely thank Preston Elliot, Steve Morrison, Kathy Romano, Nick McIlwain, CaseyBoy and the rest of the show's staff along with 93.3 WMMR for everything they have done for us, it will always be remembered!!
CaseyBoy, Kathy Romano, Nick McIlwain with Eric and Scott
Steve Morrison, Eric and Preston Elliot
Tuesday, January 27, 2009 Update
What a difference a kidney makes!! Our old Eric is back. Eric has regained about 30 lbs and all of his former energy. His medication list has been greatly reduced. The rise in his creatinine which began in November seems to have leveled out and is within the normal limits, ranging between 1.1 and 1.2. The doctors at Hopkins are pleased and believe Eric is stable.
Eric has developed two hernias in his abdomen which first appeared during his dialysis. He has experienced two painful bouts as a result of the hernias and a follow-up appointment is scheduled for early February. Surgery will most likely be required to repair this problem.
Eric's donor, Jeff, says that he feels great and has experienced no negative effects as a result of donating to Eric. We, of course, will be eternally grateful to Jeff for his heroic act.
Transplantation is a treatment, not a cure. Please continue to pray for Eric and all patient's with kidney disease.
Friday, February 26, 2010 Update
It has been over a year since the last update, due to issues beyond my control. However, I am very glad to report that Eric and his new kidney are now almost 17 months out from his September 30, 2008 transplant.
In February of 2009 Eric had his hernias repaired. It turned out there were four hernias. A large piece of plastic mesh was placed in his abdomen to reinforce the area and stop the hernias from reoccuring. It is our belief that the hernia were caused by the fact that his dialysis catheter had been tacked down due to the repeated migration episodes which were clogging the catheter.
The road has been rocky due to Eric acquring Shingles (Herpes Zoster) in September of 2009 which required him to be hospitalized for 12 days. We were told the situation could have been fatal or could have caused rejection of his graft. Luckily, Eric came through it and so did his new kidney. To this day he still has some nerve problems which cause him to be itchy and his eye is light sensitive. These remaining issues may or may not disappear with time, but all things considered, Eric was lucky to not have had more serious results.
Eric's creatinine had been slowly increasing in December and January and another biopsy was done in mid January and it was determined that he was experiencing Type 1B rejection. The doctors at Hopkins wanted Eric admitted the next day for a six day admission to be treated with high doses of sterioids. Now, a month later, it appears that Eric's creatinine is stable but is running in the 1.4 area. A creatinine of 1.5 or higher is a cause for concern by Hopkins so we are closer to that level than we prefer. Eric is still required to have blood work drawn twice a week so Hopkins can closely monitor him for any other signs of a problem.
As a reader of this update, you may be a dialysis patient considering transplantation and wondering whether it would be a smart move to consider transplantation. The unfortumate truth is that you and Eric have serious medical problems that are not going to go away. The need to cleanse your blood of toxins must be done in some form or the result is death. Both dialysis and transplantation have their issues, however, as a long time observer of the results of both treatment types, in my opinion, and I'm sure Eric would agree, transplantation provides the best quality of life a person with renal insufficiencies can expect.
Eric's second transplant on September 30, 2008 is considered a much for difficult situation given the antibodies his body has acquired during the period of the first transplant. I am certain the Shingles and rejection episode are directly related to that situation. I also need to point out that without the skills of the doctors at Johns Hopkins Hospital, Eric would likely still be on dialysis since none of the seven transplant centers in our immediate vicinity had the capability of treating Eric's highly sensitized situation.
If you are in need of a transplant, my wholehearted suggestion is to explore all options. If at all possible, don't settle on a transplant center based on the convenience factor - seek the center with the most experience, especially if you have a complex medical history.
This is the video clip of Eric on Fox 29 News in Philadelphia on June 7, 2007
Click below for an audio clip that was broadcast live on the radio discussing Eric's search for a kidney donor on the Preston and Steve Morning Show on Philadelphia's 93.3 WMMR on January 9, 2008
Preston and Steve Audio Clip
